Posts: 19

Topic: My husband has BDC and is going to die

My name is Charlene, my Husband is John.In Feb.2005 he was dx'd with Cholangiocarcinoma, aka BDC, Given 18 months to live but we had a very aggresive Dr. who put stents in, used photo dynamic therapy and enternal radiation. Those treatments have given him more time but this last week he started throwing up and his liver enzymes were completely over the top of the chart.We went to hospital ER where they did a ultra sound and found the cancer has metastesized 3 places in his liver and to his lymph nodes.I think the end is coming soon, he doesn't want to hear that but I have to.My heart is breaking. I'm losing my wonderful, loving husband. He's only 51, way to young to die.I don't know what else to say. I'm at a total loss...Charlene

Re: My husband has BDC and is going to die

Dear Charlene,I can understand all the heartbreak you're going through now, and I know words can't make it any better. We are all here if you need to vent and just have someone to listen to you who understands what you're going through. I lost my mother to this horrendous disease in January and it still helps me so much to come to this site. My mother was too young to die at 64, and your husband is so much younger than that - my heart bleeds for you and for your family. It sounds like he is putting up a valiant fight - it's just so unfair that this disease takes so many wonderful people away from us.

Try to take care of yourself as well as your husband - you're in our thoughts and prayers.- Joyce

Re: My husband has BDC and is going to die

I am in the same place, Charlene. Its so painful and we cant get away from it. My husband is doing well so far, but has a huge 14 cm tumor with 2 small buddies on the left lobe. With a tumor that large, it ended cancidacy for alot of hopeful therapies. He is slowly loosing power, weight and hope. Its helpless. I have never felt such pain, but again digging deep and showing what your made of is what it takes. Enjoy each day, everyone here knows alot about what we are feeling.

Re: My husband has BDC and is going to die

Thanks to you both for your words of encouragment. We were doing so well for so long that I really believed God had cured John. I have no faith anymore. He has gone from happy and actually planning our future in Feb, ( he was dischargeg from hospice when they took blood and couldn't find any cancer markers at all !!!! ) to being sick within the last 2 weeks. The new tumors are on both lobes of his liver. We're going to see an oncologist the 30th of August. I know from our specialist that John was only given 18 months so he has had more time than most people do but I'm just devestated finding out God didn't heal him.It's not just me but John has just been knocked for a loop. He's gone from looking forward to the future to DEEP depression. He looks at me with this yearning look, a look that seems to say " Help me ". It is so lonesome knowing you are going to die, No one can ever really ease that hurt, that fear.I love John so very much....Charlene

Re: My husband has BDC and is going to die

Dear Charlene,I know just what you mean about the helplessness of watching your loved one die. My mother became very depressed toward the end and I had anti-depressants prescribed for her, but she died before they took effect. And anyway, it's perfectly understandable to be depressed when you know you're dying - what can you possibly do to make that better??? What helped her the most was when she talked to a hospice counselor and then a clergy member. She told me she discussed life and death with them -- which she didn't discuss with me too much, probably because I'm her daughter and she didn't want to burden me. I wish she had burdened me!! But sometimes people feel free to voice their fears to a third party, rather than someone they love, even their spouse. My stepfather died 4 years ago of cancer and he would never discuss his dying with my mother or with me, and we were all very incredibly close. So maybe your husband would benefit from talking to someone outside the family - there must be so much going on in his mind right now that he's afraid to say. I'd also suggest some inspirational audiotapes - Deepak Chopra was my mother's favorite and I believe that gave her some comfort.

The first thing my mother said after she was given her death sentence by the oncologist was "I don't want to go through this alone." It broke my heart and I told her I would never leave her side, but in the end, dying is something we all do alone and I just couldn't share it with her. I was there every minute, holding her hand, taking care of her, trying to cheer her up, but she was alone and I was helpless in the face of her impending death. What a horrible thing it must be to be faced with your death -- even the most stalwart people are afraid and sad -- my mother was so sad that she wouldn't see my daughter grow up, and that she would make me so devastated by leaving me. Of course your husband, too, is worried about you as well as himself. My heart goes out to both of you and I hope you have some peace and some light in your lives before you have to say good-bye. It's so hard to go through this. I hope you find some way to make it a bit easier.Much love and luck,Joyce

Re: My husband has BDC and is going to die

Charlene - It breaks my heart to read your messages. I, like many on this site, know what you are going through and the totally helpless feelings you have watching the one you love suffer and be slowly taken by this horrific disease. I lost my husband to cc on March 5, 2007. He survived 1 1/2 years after diagnosis and we had so many ups and downs--times we worried he wouldn't survive his latest illness or infection and times when we were sure he was winning the battle and would survive. Oh, how we hoped and prayed. But Dan always reminded me that whatever happened, it was God's plan and He was in control.

Dan's only regret at the end was leaving me, his daughters and grandchildren. He wanted so bad to stay and take care of us and watch his grandbabies grow. He was only 58. Yet I am constantly reminded that he was still much older than many of the young people on this site who lost their courageous battle.

For now, try so hard not to worry about tomorrow--enjoy what ever days and moments you have left together, even if it's just laying together watching tv or listening to music. Remind yourself that you are still together and relish every minute for as long as you can. Remember, God is in control.

Remember, too, to take care of yourself. My prayers are with you and your family.

Re: My husband has BDC and is going to die

Hi, It's Charlene again. It's Tues. 21 and I'm trying desperatly trying to get John in to see his new Oncologist. He has an appt. on the 30th but he's developed severe pain in his back.When I asked his pain level he said it was a 5, that means it's probably really a 7 or 8.he hates to admit he has pain, he hates to admit the cancer is back. He's still talking about getting a JOB!!! I don't know what to do or say to him. I try to tell him we have to find out what's going on before he can think of anything like that.I believe he's so terrified about the mets to his liver that he's trying to ignore everything going on.Does anyone have any advice?John won't talk about any of this saying " If I don't think about the cancer , it's not really there."I can't keep going like this, he's putting all decisions on me, doesn't want to hear any news unless it good...so if I don't say anything he's got to know it's bad.I need some support here from you all who are going through this please.Thanks,Charlene

Re: My husband has BDC and is going to die

Charlene,Your husband sounds just like my stepfather, who died of lung cancer 4 years ago, age 59. My mother and I took care of him and did everything for him, because he would never even admit he had cancer - even at the very end. The thought was too scary, so he would sometimes even talk to the doctors and not tell us what was said. Some people just have to live in denial - it's the way they cope. While it was extremely frustrating, we tended to humor him most of the time - unless something very important came up, like a decision about chemo or having him sign over his power of attorney or Do Not Resuscitate order. He would also never admit to having pain. I was always giving him pain medicine whether he wanted it or not.

It's so hard to have to do everything for someone in denial like that, so I know what you're going through. It can drive you crazy, yet you still feel so sorry for the person that you just can't come out with the blunt truth --- and even if you do, they'll still keep acting like they don't know. Most people want to know the truth but some people want to be treated like children and have the decisions made for them - and I guess that's your job. Even my mother, at the end, started thinking she had another year or so to live - and how could I take that away from her? The caretaker is the one who has to keep everything bottled up and never show the strain, and it takes its toll. I do so feel for you - it sounds like you're doing everything you can and being a great advocate for him. And maybe your husband will snap out of his denial once the shock has worn off -- right now his mind is trying to cope with the fact that he may be dying and it's a very difficult concept to cope with.

I hope you have some people you can lean on for support in this scary time - and you always have us, on this board, if you need an ear.

Re: My husband has BDC and is going to die

hello, charlenereading your story was as though someone had looked into my journal . . . my husband was diagnosed with bdc june 27,2006 and given 3 months to live. He succumbed to this cancer July 27, 2007 in his own home surrounded by his loving children and myself. My husband did not live in denial for himself but for me. Each day as his strength was drained from him b/c of the vomiting and pain, he told me how he was going to get over this "bug." Do not believe for one moment that he cannot see the fear in your eyes or sense it in your voice. My husband wanted to be strong for me b/c he knew I had to stay alone after 30 years of living/ breathing with him. His cancer pain will become unbearable for you both. Cherish the time you have with him.my proud, strong, beautiful husband was only 51.

Re: My husband has BDC and is going to die

Hi Charlene,I am so sorry for the situation you are in. Reading your posts brings back to the surface memories I am trying to deal with. My husband died in May at the age of 50 after 18 months of agressive treatment. I have only one regret and that is that I would have not kept pretending that things were going to be okay. I spent a lot of time doing that because that is what I thought he wanted to hear. In my mind I needed to be "forever" the cheerleader. I wasn't in denial because I was the one researching, questioning, and reading but I wanted to spare my husband all the nasty details. Although I spent almost every moment with my husband when he went on hospice, I still never talked of him not being here. I would advise you to take the cues from your husband. Be whatever he wants you to be, the cheerlearder, in denial, or both depending on the day. I wish you and your husband the best. Take care of yourself.Joyce

Re: My husband has BDC and is going to die

Thank you so much for the words of understanding. I am doing just that...I check what type of mood he is in and go from there.At first John didn't want to talk at all but after a while I really pushed him to face facts.Neither one of us had a will or anything except what we told each other so I was desperate to get him to do something so the Drs would know his wishes at the end.His children (we're remarried ) didn't care as long as they were assured of getting their share of Johns things. That hurt him SO BAD. It also showed him he had to take some responsibility for what was going to happen.So we finally have that taken care of, now he's more concerned about me being left behind than he is of his passing.Can anyone tell me if their loved ones had mets from colon cancer to the liver and what type of treatment they had? I've been reserching the types of chemo and radiation available because I can't just sit here and wait till the 30th w/o doing anything.Every suggestion or piece of info I can get is extremely welcome.Thanks again,charlene

Re: My husband has BDC and is going to die

Hi Charlene-my husband Dave was told his CC was inoperable from the beginning (March 07) because he had liver mets with many tumors large and small. We went to Mayo clinic for a second opinion....same thing. He started chemo in May....Gemzar and ociliplatin. He was given a month break in July and his follow up CT scan showed no change....no progression....no spread. So his break is continuing for 6 more weeks then another CT scan. Last week he started on alternative treatment of IV vitamin C. Like others who have answered you, I support Dave in whatever mood he is in. He does not talk of dying and makes plans for the future and frequently reminds me he will love me "forever". I take the cue from him that he wants to stay in his optomistic mind and as he says...."live with cancer". Our love grows deeper every day and we enjoy every moment together with no regrets. Hoping for the best for you and your husband. Love heals the mind and spirit and we hope the body. Patrice

Re: My husband has BDC and is going to die

Patrice,I know what you're going through. God help us all through this terrible time. We meet the oncologist today. I want to talk to John about all the possible treatments available if the tests come back mets from his colon cancer but no luck. He says to just write it all down so I can question the Dr.Well he's going to have to face this today. I love him so much but I just wish he was more proactive with his treatments.If it was me I would be doing ANYTHING to try and find a cure for myself.I realize he's in a state of denial but how can I snap him out of it. if he keeps just trying to ignore it he's going to die. I really believe you must have a fierceness in your approach to treatmentWell I have to go for now but i will update as soon as pssible after seeing the Dr.Peace and Love to us all,Charlene

Re: My husband has BDC and is going to die

Hi again,We went to the oncologist yesterday. Not real good news. Dr. said from prelininary tests the new tumors on Johns liver is from the BDC not mets from his previous colon cancer.We have to have a ct scan,(to check for mets to his lungs and other places), their going to do a needle biopsy on the tumors to confirm what they're from.The Dr. said they have only one treatment that might work for a while.I have a real bad feeling about this. I'm afraid of the biopsy itself since it's very dangerous.Johns birthday is next month on the 17th. I'm wondering if he's going to be here for that.I'm so depressed and distracted I can't stay at work all day. I just want to be at home with John.I'm worried about Johns Mom who is 87 and we're taking care of her. She knows he may die but I think she's telling herself he really isn't. I'm afraid of losing both of them.I'll keep you all posted.Charlene

Re: My husband has BDC and is going to die

Hi Charlene, I'm so sorry to hear what John is going through. I can't express enough how close to home this hits. Yes, knowing or thinking your dying is a lonely place to be and is very depressing. I to am 51 with cancer on my remaining right lobe of liver, mets to both lungs and now mets to my ribs and tailbone. I just finished 3 years of different chemo regimens and radiation and decided to take a break. Those 3 years have been full of misery and pain to say the least. Thank God and my loving family for being there for me. My fate is in God's hands and there comes a point where reality appears to become completely unfair. The last Regimen I started was called Taxotere it knocked me for a loop. However I know it attacked the cancer cells in my liver and lungs as I could feel the pain and saw the blood cells clearing from my lungs. The chemo actually caused my lungs to loosen and clear as I have never been a cougher. But it will knock out your white blood cells within 5 days and you will need to take filgrastim injections and antibiotic for five days to bounce back. I was pretty low physically feeling and just decided to take a break. Mean while I'm trying herbs and spices a concoction I put together myself until I gain back weight and strentgh. Charlene if John's colon cancer is stable then depending on the tumor sizes he still can fight for more time but it really has to be his decision unfortunately. I say I know one day I will succumb to this disease but then on the other hand I say I'm living today and maybe the cure will be tomorrow. I know I am a realist, I believe in hope, and I also have come to terms with the fact if God's plan is for me to leave this mortal world tomorrow so be it. Charlene your entering scary and unknown territory. Your sense of urgency and saddness shows your afraid of John leaving and your love is so strong you would do anything to help him survive. I really apologize if I'm being to blunt but you really need to reflect on what you have accomplished so far with God's help and think of the big picture. You have been a caregiver,advocator, and a loving and supportive wife, you have nothing to feel guilty about. What you have been doing is so admirable but, We all are in our creators hand's from birth til death. There is a point where you may not be able to help John anymore. When that happens all that will be left is love, support, and comfort with a few prayers. Charlene, I share your heart ache and frustration and to am fighting, praying and hoping for a miracle as I really don't want to leave my wife ,children and 2 grandchildren. God has been gracious just to allow me to see the birth of my Grandchildren. My Grandson started kindergarten a couple of weeks ago and today he brought home an order form for a school fund raiser. In the brochure was a 2008 prayer a day booklet. I agreed to order it if he will read the daily prayers with me and he said sure Papa. I hurt but I refuse to let it fog up my hope of another day. whether it arrives or not.God Bless You and John! Jeff G.

Re: My husband has BDC and is going to die

Jeffg,I am so sorry this is happening to you. I'm happy you have a strong faith in God to see you through this horrible time.My husband John has found his way back to God during this time. Maybe God knew that this was the only way to bring him back, I don't know.I look to my future and truely wonder if i will have one. The stress of his sickness and the fear of him being in pain again is really affecting me physically as well as mentally.I can't imagine what is going on in your or Johns head at this time.I wish i knew his true feelings. he never wants to talk. Please keep writing, I really want to know how you're doing.I'll keep you posted on Johns progress.God bless and keep us all,Charlene

Re: My husband has BDC and is going to die

I'm so depressed!!! John has a ct scan and a liver biopsy the 19th and I don't know how i'm going to go through this again.I'm so tired of all the Drs. and bills, having to work and take care of everything including my mother in-law who's 87.I'M ANGRY. Johns going to leave me. I'm going to be alone for the rest of my life and i hate it. I don't want to be alone. My friend just lost her husband 2 years ago from the same disease and she's still grieving so much. It's not getting any bettet!!!!I HATE THIS CRAP. I want to scream and hit some one. I feel like I'm going to explode, I don't want to do this anymore. I just want to get in bed and sleep but I can't because all I have are nightmares. I'm on meds and still get no relief. I don't know what to do.Charlene

Re: My husband has BDC and is going to die

Charlene

your feelings are absolutely normal, I can pretty much bet that all of us have, are or will go through the same things. doesn't make them better though. I know you are on meds, but are you talking to any one? therapist? support group? Please seek this out, don't let this disease destroy you too...

Re: My husband has BDC and is going to die

Oh Charlene, it is so sad to read what you are going through.It will most likely be of no help to you, but the only thing that springs to my mind, is that with possibly so little time left with your man, you must try to make the most of it. Easier said by me, than done, for you.Wish there was a cure all for the anguish loved ones have to suffer!BIG hugs all the way from UK!

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